Cystic fibrosis family advisory board of UI Health Care
The Stead Family Children’s Hospital Cystic Fibrosis Family Advisory Board is a group of parent volunteers who meet often with clinic staff to help improve the clinic and cystic fibrosis care.
Our mission
The Family Advisory Board (FAB) seeks to enhance the delivery of patient and family-centered health care at Stead Family Children’s Hospital by providing a mechanism for families to work in partnership with the hospital faculty, staff, and administration to improve the health and well-being of children with cystic fibrosis and their families.
Who we are
Our group is comprised of parents of pediatric patients seen at the CF Center. We meet quarterly to discuss topics of our mission statement. We advocate for the patients seen in the CF Center by partnering with representatives/staff to discuss ideas to improve and/or evaluate the services and programs offered. Finally, we are the foundation of the family/caregiver connections in our center.
Meet our families!
The Bulanda Family
We are Brad, Katie, and Jett Bulanda from Cedar Rapids. Jett received a diagnosis of CF before he was born with two copies of delta F508 and has been a patient at the University’s CF clinic since he was 5 days old. Despite his daily medications and therapies, Jett is a thriving little boy with endless energy. The last thing he has let CF do is hold him back from playing and enjoying life. Jett loves playing with his cousins and friends. Jett is very social and able to make friends easily everywhere we go. Among his favorite things are swimming, playing with his dog, feeding his chickens, riding his toys around our yard, jumping at the trampoline park, and helping in the kitchen. We would thoroughly enjoy making connections with other CF families.
The Hahn-Rogers Family
Hello from Whitney, Willow (9) and Everlee (7). We currently live in Oskaloosa. Whitney works at the elementary school where Willow is in third grade and Everlee is in first. Willow was diagnosed with CF via heel prick test at 9 days old. She has ddf508. The girls both enjoy gymnastics, reading, and playing Roblox. Willow is a very active and healthy girl, who never lets CF stop her! We would love to connect and help others on their CF journey, especially those with “non-traditional” families.
The Larson Family
Hello from Jake, Amber, Luke and Brynn Larson! Luke was diagnosed at birth with 2 copies of the deltaf508 gene. We started our journey in Ann Arbor Michigan and later moved back to Iowa to be closer to family. Luke is now 16 and has the privilege of many new treatments and medications that has kept him very healthy. He enjoys football and hanging out with friends. Brynn is 13 and loves soccer, skating and sharks. Jake gets to work from home as a toxicologist and helps organize the Cedar Rapids Great Strides walk. Amber is a nurse at St Luke’s hospital and is currently co-chair of the family advisory board.
The Roscovius Family
We are the Roscovius family. Jesse, Molly, Ensley & Waylon. We are a blended family and have 2 big kids, Megahn & Keaton. We are also blessed with a son-in-law, Travis & grandson Baker, with a granddaughter on the way! Our warrior Waylon was born in July of 2020 with no indication of Cystic Fibrosis. 6 days after he was born we got a call from his pediatrician letting us know his newborn screen indicated CF, and on day 7 of his life we were already meeting our new friends at the University of Iowa. How crazy it was to see our newborn baby take applesauce and enzymes on a spoon! Fast forward to almost being 3 and feeling so blessed by the research and changes soon to come! While CF has been hard, most days we see the blessing in disguise. I would love to meet with new families & help answer any questions you have. I am here to support you and your babies in anyway that I can.